Health information on the Internet

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A 1984 United States advertisement for access to health information with the 1980s Apple III Desktop Computer - The Future for Medicine (FDA 095) (8249708093).jpg
A 1984 United States advertisement for access to health information with the 1980s Apple III

Health information on the Internet refers to all health-related information communicated through or available on the Internet.

Contents

Description

The Internet is widely used by the general public as a tool for finding health information. [1] In the late 1990s, researchers noted an increase in Internet users' access to health-related content despite the variation in the quality of information, level of accessibility, and overall health literacy. [2] Access to health information does not guarantee understanding, as health literacy of individuals vary.

It is believed patients who know their medical history may learn and interpret this information in a way that benefits them. [3] This, however, is not always the case because online health information is not always peer reviewed. [2] Physicians worry that patients who conduct Internet research on their medical history are at a risk of being misinformed. [4] [5] In 2013, the opinions about the relationship between health care providers and online health information were still being established. [6] According to a 2014 study, "The flow of information has fundamentally changed, and physicians have less control over health information relayed to patients. Not surprisingly, this paradigm shift has elicited varied and sometimes conflicting views about the value of the Internet as a tool to improve health care." [7]

Importance of the physician-patient relationship

In cases in which a physician has difficulty explaining complicated medical concepts to a patient, that patient may be inclined to seek information on the internet. [8] A consensus exists that patients should have shared decision making, meaning that patients should be able to make informed decisions about the direction of their medical treatment in collaboration with their physician. [9] Rich, educated, and socially advantaged patients may enjoy the benefits of the shared decision-making approach more than those with a lower socioeconomic class or minority status. [10]

Patients' naive understanding of their health contributes to a range of issues, including the tendency to deviate from the physician's medical advice or to miss medical appointments. [11] Patients with limited access to health information are more likely to use complementary and alternative medicine, and fail to inform their physician about it. [11] [12] Complementary and alternative medicine may not be evidence-based medicine. While physicians can work on improving their doctor-patient communication skills, individuals can become more knowledgeable about their health through patient education programs. A study by Lorig in 2002 suggested healthcare processes can be efficiently improved with patients' behavior. [13]

Social media

Social forums in which anyone can have conversations about health with their peers exist; these are especially popular among patients who want to talk about shared medical concerns with others. [14] Those who participate in online communities that discuss health issues report feeling relieved about their health worries, perceiving they have more control over their health and medical condition, gaining more medical knowledge, and having more personal agency overall. [15]

Some research studies have failed to find evidence to validate the physicians' concerns about patients receiving misinformation online or using online health information to conduct self-diagnosis. [14] [16] [17] Patients with chronic diseases who use the Internet to get health-related information often acquire good skills to judge the quality of information that they find. [18]

Social media platforms are considered channels physicians can use to acquire insight on their patients' thoughts. [19] Patients have increasingly turned to social media for health information, sometimes of dubious quality. [20] [21] [22] [23] Several studies have used social media to gather data on patients' adverse drug reactions (ADRs) with generally promising results. [24]

Some commercial organizations use health information gathered from the Internet, raising serious ethical and privacy concerns, [25] [26] including the risk of accidental violations of the patient privacy by healthcare providers. [27] [28]

Academic medical literature

The written record of peer-reviewed medical consensus is stored in scientific journals. There has been an academic journal publishing reform since the advent of electronic publishing. Although some journals have adopted an open access template for online users, [29] [30] other journals are opposed to a widening of open access publishing. [31] The open-access policy has significantly increased the accessibility of professional health information to researchers, physicians, and the public through the Internet. Some of the academic medical literature, however, may not be peer-reviewed [32] [33] and users are advised to exercise caution when reading health-related articles from such websites.[ citation needed ]

Quality

The nature of health-related information available on the Internet is complex and its quality varies greatly by source. [34] [35] [36] [37] The standards for ensuring quality control on the Internet have been criticized[ citation needed ] and no single standard is universally accepted. [38] Many researchers have investigated this issue in detail, resulting in a wide range of theories from different disciplines.[ citation needed ]

One study found that a correct diagnosis given by the average online symptom checker happened only 34% of the time. [39] Triage recommendations (i.e., whether immediate, normal, or self-type of care is needed) were also assessed and found to be correct 50% of the time. [40] Quality of health information on the internet becomes important in this context as both misdiagnosis and inaccurate recommendations for triage are possible. Additionally, most online diagnostic tools fail to account for the user's familial and personal medical history, including current diagnoses and conditions they possess.[ citation needed ]

Personal health information

For many applications, people wish to use health information on the Internet to gain further insight about a personal health concern. Because of this, the goal is often to use the Internet to find information as it is described in a person's medical record. [7] In 2013, 72% of US adults used the internet to search for health information. [41] Since the advent of electronic media, medical records have been increasingly kept as electronic medical records.[ citation needed ] More healthcare professionals rely on electronic medical records because it is a favorable means for patients to access their personal health information. These comprehensive systems allow patients to easily access their records without a doctor's visit, view interactive patient education materials, and use a greater range of health services such as renewing a medical prescription or making an appointment online [42] All medical records are protected health information because sharing personal health information exposes an individual to a range of harm that may result from a violation of their expectation of privacy. [43] Some privacy risks include an increased likelihood of medical identity theft, termination of disability coverage and unauthorized use of advanced medical research by third parties.[ citation needed ]

As of 2000, there is a broad international debate about ways to balance patient and commercial medicine demands for personal health information with an individual's needs for safety and respect. [44] [45]

Electronic medical records

An electronic medical record is a medical record stored on electronic media, [46] for example, computer servers or hard-drives.

De-identification

De-identification is an attempt to remove patients' identifiable information from their medical records with the intent of making the information transferable without compromising patients' identities [ citation needed ]. The closer the data is to anonymization, the lesser its value to those who want it [ citation needed ]. Research companies and digital advertising companies are among the third parties that use such information in a variety of ways, which include using these patient datasets to reach their target audiences, formulate new medications or collect genetic data for government surveillance. Patients' data is rarely fully anonymized [ citation needed ]. Many controversies regarding the de-identification of patient's data exist. [47]

Research using personal health information

There is a high commercial demand for accessing extensive collections of various types of personal health care information. [48]

Distribution of collections of personal health information

In 2014 National Health Service (NHS) in the United Kingdom proposed selling patients' personal health information. [49] In 2013, however, various groups had expressed worries over dangers resulting from the distribution of patients' identifiable information along with their medical history. [50]

Major sources of information

Mobile apps

Mobile apps are highly variable in the quality of health information they offer. 95% of cancer information mobile apps targeted at health care workers had scientifically valid information. In contrast, only 32% of cancer information apps aimed at the general public had valid information. Health apps have not been subject to much regulation or oversight. For example, an app by wellness blogger Belle Gibson promoting alternative, unproven cancer therapies was downloaded over 200,000 times in its first month after its 2013 debut. It reached a rank of #1 in the Apple App Store and was voted Apple's Best Food and Drink App of 2013. Gibson later admitted that she had never had cancer, as she had claimed when marketing the app. [41]

PubMed

PubMed is a free search engine that primarily lists the MEDLINE database of peer-reviewed references and abstracts on life sciences and biomedical topics maintained by the United States National Library of Medicine at the National Institutes of Health. When readers search and try to access a manuscript of interest, they are directed to the website of the respective journal where the document was originally published.[ citation needed ]

User-generated content

In 2014, Wikipedia was described as "the leading single source of healthcare information for patients and healthcare professionals". [51] The information available on Wikipedia may not be peer-reviewed. Other wiki-style website exist to promulgate medical and heath-related information.

Regulation

In the United States, the Food and Drug Administration offers guidance for health industry organizations that share information online. [52] [53]

Related Research Articles

<span class="mw-page-title-main">Health On the Net Foundation</span> Nonprofit organization that certifies online medical information

Health On the Net Foundation (HON) was a Swiss not-for-profit organization based in Geneva which promoted a code of conduct for websites providing health information and offered certificates to those in compliance.

<span class="mw-page-title-main">Health informatics</span> Computational approaches to health care

Health informatics is the study and implementation of computer structures and algorithms to improve communication, understanding, and management of medical information. It can be viewed as branch of engineering and applied science.

<span class="mw-page-title-main">Electronic health record</span> Digital collection of patient and population electronically stored health information

An electronic health record (EHR) is the systematized collection of patient and population electronically stored health information in a digital format. These records can be shared across different health care settings. Records are shared through network-connected, enterprise-wide information systems or other information networks and exchanges. EHRs may include a range of data, including demographics, medical history, medication and allergies, immunization status, laboratory test results, radiology images, vital signs, personal statistics like age and weight, and billing information.

eHealth describes healthcare services which are supported by digital processes, communication or technology such as electronic prescribing, Telehealth, or Electronic Health Records (EHRs). The use of electronic processes in healthcare dated back to at least the 1990s. Usage of the term varies as it covers not just "Internet medicine" as it was conceived during that time, but also "virtually everything related to computers and medicine". A study in 2005 found 51 unique definitions. Some argue that it is interchangeable with health informatics with a broad definition covering electronic/digital processes in health while others use it in the narrower sense of healthcare practice using the Internet. It can also include health applications and links on mobile phones, referred to as mHealth or m-Health. Key components of eHealth include electronic health records (EHRs), telemedicine, health information exchange, mobile health applications, wearable devices, and online health information. These technologies enable healthcare providers, patients, and other stakeholders to access, manage, and exchange health information more effectively, leading to improved communication, decision-making, and overall healthcare outcomes.

A personal health record (PHR) is a health record where health data and other information related to the care of a patient is maintained by the patient. This stands in contrast to the more widely used electronic medical record, which is operated by institutions and contains data entered by clinicians to support insurance claims. The intention of a PHR is to provide a complete and accurate summary of an individual's medical history which is accessible online. The health data on a PHR might include patient-reported outcome data, lab results, and data from devices such as wireless electronic weighing scales or from a smartphone.

An e-patient is a health consumer who participates fully in their own medical care, primarily by gathering information about medical conditions that impact them and their families, using the Internet and other digital tools. The term encompasses those who seek guidance for their own ailments, and the friends and family members who research on their behalf. E-patients report two effects of their health research: "better health information and services, and different, but not always better, relationships with their doctors."

Online health communities are online social networks related to health. They primarily provide a means for patients and their families to learn about illnesses, to seek and offer social support, and to connect with others in similar circumstances. These online groups can be composed of individuals with illnesses, groups of medical professionals with shared interests, non-professional caregivers and family of patients, or a combination. The term "online health community" is primarily academic jargon.

<span class="mw-page-title-main">Health 2.0</span>

"Health 2.0" is a term introduced in the mid-2000s, as the subset of health care technologies mirroring the wider Web 2.0 movement. It has been defined variously as including social media, user-generated content, and cloud-based and mobile technologies. Some Health 2.0 proponents see these technologies as empowering patients to have greater control over their own health care and diminishing medical paternalism. Critics of the technologies have expressed concerns about possible misinformation and violations of patient privacy.

mHealth Medicine and public health supported by mobile devices

mHealth is an abbreviation for mobile health, a term used for the practice of medicine and public health supported by mobile devices. The term is most commonly used in reference to using mobile communication devices, such as mobile phones, tablet computers and personal digital assistants (PDAs), and wearable devices such as smart watches, for health services, information, and data collection. The mHealth field has emerged as a sub-segment of eHealth, the use of information and communication technology (ICT), such as computers, mobile phones, communications satellite, patient monitors, etc., for health services and information. mHealth applications include the use of mobile devices in collecting community and clinical health data, delivery/sharing of healthcare information for practitioners, researchers and patients, real-time monitoring of patient vital signs, the direct provision of care as well as training and collaboration of health workers.

Health information technology (HIT) is health technology, particularly information technology, applied to health and health care. It supports health information management across computerized systems and the secure exchange of health information between consumers, providers, payers, and quality monitors. Based on a 2008 report on a small series of studies conducted at four sites that provide ambulatory care – three U.S. medical centers and one in the Netherlands, the use of electronic health records (EHRs) was viewed as the most promising tool for improving the overall quality, safety and efficiency of the health delivery system.

Health 3.0 is a health-related extension of the concept of Web 3.0 whereby the users' interface with the data and information available on the web is personalized to optimize their experience. This is based on the concept of the Semantic Web, wherein websites' data is accessible for sorting in order to tailor the presentation of information based on user preferences. Health 3.0 will use such data access to enable individuals to better retrieve and contribute to personalized health-related information within networked electronic health records, and social networking resources.

<span class="mw-page-title-main">Health information on Wikipedia</span>

The Wikipedia online encyclopedia has, since the late 2000s, served as a popular source for health information for both laypersons and, in many cases, health care practitioners. Health-related articles on Wikipedia are popularly accessed as results from search engines, which frequently deliver links to Wikipedia articles. Independent assessments have been made of the number and demographics of people who seek health information on Wikipedia, the scope of health information on Wikipedia, and the quality and reliability of the information on Wikipedia.

Digital health is a discipline that includes digital care programs, technologies with health, healthcare, living, and society to enhance the efficiency of healthcare delivery and to make medicine more personalized and precise. It uses information and communication technologies to facilitate understanding of health problems and challenges faced by people receiving medical treatment and social prescribing in more personalised and precise ways. The definitions of digital health and its remits overlap in many ways with those of health and medical informatics.

Health care quality is a level of value provided by any health care resource, as determined by some measurement. As with quality in other fields, it is an assessment of whether something is good enough and whether it is suitable for its purpose. The goal of health care is to provide medical resources of high quality to all who need them; that is, to ensure good quality of life, cure illnesses when possible, to extend life expectancy, and so on. Researchers use a variety of quality measures to attempt to determine health care quality, including counts of a therapy's reduction or lessening of diseases identified by medical diagnosis, a decrease in the number of risk factors which people have following preventive care, or a survey of health indicators in a population who are accessing certain kinds of care.

Infodemiology was defined by Gunther Eysenbach in the early 2000s as information epidemiology. It is an area of science research focused on scanning the internet for user-contributed health-related content, with the ultimate goal of improving public health. It is also defined as the science of mitigating public health problems resulting from an infodemic.

<span class="mw-page-title-main">David W. Bates</span> Researcher

David Bates is an American-born physician, biomedical informatician, and professor, who is internationally renowned for his work regarding the use of health information technology (HIT) to improve the safety and quality of healthcare, in particular by using clinical decision support. Bates has done work in the area of medication safety. He began by describing the epidemiology of harm caused by medications, first in hospitalized patients and then in other settings such as the home and nursing homes. Subsequently, he demonstrated that by implementing computerized physician order entry (CPOE), medication safety could be dramatically improved in hospitals. This work led the Leapfrog Group to call CPOE one of the four changes that would most improve the safety of U.S. healthcare. It also helped hospitals to justify investing in electronic health records and in particular, CPOE. Throughout his career, Bates has published over 600 peer reviewed articles and is the most cited researcher in the fields of both patient safety and biomedical informatics, with an h-index of 115. In a 2013 analysis published by the European Journal of Clinical Investigation, he ranked among the top 400 living biomedical researchers of any type. He is currently editor of the Journal of Patient Safety.

<span class="mw-page-title-main">OpenNotes</span> American healthcare research initiative

OpenNotes is a research initiative and international movement located at Beth Israel Deaconess Medical Center.

John W. Ayers is an adjunct associate professor and epidemiologist at University of California, San Diego, affiliated both with the university's School of Medicine and its Qualcomm Institute. He researches in the field of public health informatics and the use of social media data in detecting behavioral health trends. His public health research expertise is in studying the circulation of information online. Trained in both political science and data science, he has published in medical journals including Journal of the American Medical Association, JAMA Internal Medicine, American Journal of Public Health, and American Journal of Preventive Medicine. His research findings have been featured in national and international media sources, including The New York Times, The Washington Post, Los Angeles Times, Time, and Newsweek.

Health data is any data "related to health conditions, reproductive outcomes, causes of death, and quality of life" for an individual or population. Health data includes clinical metrics along with environmental, socioeconomic, and behavioral information pertinent to health and wellness. A plurality of health data are collected and used when individuals interact with health care systems. This data, collected by health care providers, typically includes a record of services received, conditions of those services, and clinical outcomes or information concerning those services. Historically, most health data has been sourced from this framework. The advent of eHealth and advances in health information technology, however, have expanded the collection and use of health data—but have also engendered new security, privacy, and ethical concerns. The increasing collection and use of health data by patients is a major component of digital health.

<span class="mw-page-title-main">Dean F. Sittig</span> US Professor in Biomedical Informatics and Bioengineering

Dean Forrest Sittig is an American biomedical informatician specializing in clinical informatics. He is a professor in Biomedical Informatics at the University of Texas Health Science Center at Houston and Executive Director of the Clinical Informatics Research Collaborative (CIRCLE). Sittig was elected as a fellow of the American College of Medical Informatics in 1992, the Healthcare Information and Management Systems Society in 2011, and was a founding member of the International Academy of Health Sciences Informatics in 2017. Since 2004, he has worked with Joan S. Ash, a professor at Oregon Health & Science University to interview several Pioneers in Medical Informatics, including G. Octo Barnett, MD, Morris F. Collen, MD, Donald E. Detmer, MD, Donald A. B. Lindberg, MD, Nina W. Matheson, ML, DSc, Clement J. McDonald, MD, and Homer R. Warner, MD, PhD.

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  51. ↑ Note - sketchy link requires registration. IMS Health (2014). "The use of Wikipedia in Health Care". Engaging patients through social media Is healthcare ready for empowered and digitally demanding patients?. IMS Health. pp. 16–26. Archived from the original on 25 January 2014. Retrieved 22 January 2014. Further cited in
  52. ↑ FDA Voice (17 June 2014). "FDA Issues Draft Guidances for Industry on Social Media and Internet Communications About Medical Products: Designed with Patients in Mind". blogs.fda.gov. Retrieved 5 September 2014.
  53. ↑ Food and Drug Administration (2014-07-07). "About the Center for Drug Evaluation and Research > For Industry: Using Social Media". fda.gov. Retrieved 5 September 2014.
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